My chemo didn't work :(

TheGoat · Regular Joined: 01 Apr 2006 Posts: 10 Location: London, UK

Hi, I was diagnosed with stage 3 esophageal cancer in february (I'm just 50), and my surgeon/oncologist decided on 3 cycles of ECX (Epirubicin, Cisplatin, Xeloda) followed by an en bloc esophagectomy, originally pencilled for July. The chemo regime was awful with many side effects. I had another CT last Tuesday after the second cylcle and unfortunately it turned out that it hasn't had any effect. So the third cycle has been aborted and the surgery will now be brought forward to early June once my immune system has fully recovered. Obviously there is a small amount of disappointment that the chemo didn't work for me but I still manage to keep positive with the support of my wife. I was just wondering if there was anyone out there who has had a similar experience and to know what their longer term experience has been?

Larry

mousa · Posted: Wed May 10, 2006 12:39 am Post subject: Re: My chemo didn't work :(

Dear Larry,

As you know, my husband, aged 65, in July 2004 was diagnosed with Stage IV gastric cancer with spread to the esophageal gastric junction and coeliac artery lymph nodes. He had 10 heavy chemos - Cisplatin, Taxol and 5FU finishing those in May 05 and then went onto oral Xeloda.
CT done 22 Nov 04 after 4 chemos showed no change. PET/CT done at beginning of Nov 05 showed no cancer. He will have another PET/CT done on 15 of this month and we will be surprised if he doesn't get another clear result - he is back to normal weight, eating very well, and looking very well. His immune system is still low but should recover if and when the Xeloda is stopped.

Oncologist says my husband is a miracle. The oncologist's colleagues and students say that it is impossible. But my husband is living proof. Credit must go to the oncologist and all the hospital staff but credit also must go the support given by friends and relatives, and prayer groups, Reiki and other hand-on-healing, meditation, and my husband's own belief that he would be well again.

Hope this is of help. Love and best wishes to you both.

Val

TheGoat · Regular Joined: 01 Apr 2006 Posts: 10 Location: London, UK

Hi Val, thanks so much for your post. It helps to know that others have had the knocks and still come through with flying colours.

I've now had my surgery date confirmed for third week of June.

I have total confidence in my medical team as well as in my own positive attitude.

I'm in the gym regularly getting strong and have managed to put weight on since diagnosis.

I'm coming round from the chemo since we stopped last week.

I'll post more as it happens.

Thanks again and my thoughts are with you for every success at the next scan.

Larry

mousa · Posted: Thu May 11, 2006 10:39 pm Post subject: Re: My chemo didn't work :(

Dear Larry,

My thoughts and prayers are with you now and in the weeks ahead. Having confidence in your medical team and your own positive attitude go a very long way to ensuring a good and full recovery.

Thank you for your positive thoughts for my husband's next PET/CT on Monday.

All best wishes,

Val

anewdawn · Regular Joined: 29 Jan 2006 Posts: 30

Dear Larry,

Hello, my name is Dawn and I am a 45 year old stage III Esophageal Cancer survivor. I celebrated my two year anniversay yesterday of being cancer free. I have not posted in awhile, but I wanted to speak to you.

I have a very similar story. I was diagnosed on 12/31/03 with cancer at the juncture where your stomach and esophagus connect. Even though the cancer had penetrated deep into the lining of the esophagus it had not mets to any lymph nodes or organs.

I began radiation and chemotherapy to try and shrink the tumor before having my esophagectomy. After enduring the treatments and being VERY SICK (the chemo was awful) I had a CT scan to determine if the tumor had shrunk. The doctor who saw me (not my regular) informed me that the treatment had not helped me at all and the scan showed no improvement. I left his office devastated and was very depressed. I could not believe that there was no improvement when I was feeling better and was able to eat a little, which before chemo/radiation was impossible.

They forwarded the results to my surgeon who ordered a PET scan immediately. When I went to see my surgeon 2 weeks later, he congradulated me. For what I asked? and he told me that the PET Scan showed the cancer had shrunk considerably and he was ready to proceed with surgery. I was amazed!!! We scheduled the operation for two weeks later and I left his office feeling HIGH like I was on drugs.

I had the surgery 5/20/04. It was a long surgery and I was in the hospital 10 days. I will tell you it was not easy. I was very sick and I was not sure I was going to make it.

Three months later I started chemo again to kill off any remaining cells that might be there.

Fast forward..... two years later and here I am. I had a large party yesterday and invited everyone who helped me through the treatment and surgery. I can now eat anything I want. I just came back from a two week vacation at the Grand Canyon.

Has it been easy? No, but that's okay. I am ALIVE. I can do anything I want..... I have to rest frequently and I have MINOR issues....But I am ALIVE and there is NO CANCER.

My message to you is DO NOT GIVE UP!! Even if the doctors tell you things are not good.....they are not God and do not know what the future holds for you. They rely on statistics that are outdated. Todays treatments are so much more advanced than 5 or 10 years ago.

Goodluck with your surgery. Please keep us updated on your progress.

God Bless You,

Dawn

TheGoat · Regular Joined: 01 Apr 2006 Posts: 10 Location: London, UK

Hi Dawn, thanks so much for your input. I know you are right. I have learnt so much in the last few months about the challenges of interpreting the various tests that are conducted to stage and measure progress.

Initially I was told I was stage IV and it had spread to my liver. The biopsy turned out to be benign, I was on top of the world when I was down graded to stage III Smile

It was disappointing that the chemo wasn't as successful as it might have been but I'm over it now.

My surgery will be in just over 2 weeks and I'm taking a short holiday with my wife Jenny next week as we have both been under extreme stress since the beginning of February.

I'm needless to say apprehensive about the recovery from surgery and adjusting to life.

I spoke with one of my surgeon's patients earlier today and it was a mix of encouraging and depressing news.

In particular he had lost considerable weight after the procedure and has been unable to gain weight since. (12 months). Is this a problem that you encountered?

He also still suffers with dumping syndrome. I've read about it but don't think that really helps to understand the true effect. Would be interested to know what your experience has been.

When I asked my medical team what I could do to prepare for the operation they responded "Get FIT and FAT" - well I won't be disappointing them. I've been at the gym under the direction of a personal trainer at least 3 or 4 sessions a week. My wife and friends don't recognise me Smile

And I've eaten at least double what I used to and put on 20 lbs.

Now I'm ready for the ordeal. I know it won't be a walk in the park. Everything I've read and discussed with others assures me of that. At the same time I'm not frightened. I know it will save my life and give me the future I want.

I'm going to try to keep some kind of diary so that I can help to inform others.

Any suggestions of things to include are welcome.

I feel strongly that the more that can be done to help others learn from our experiences the better given the relative rarity of this particular cancer.

Thank you for all your support and input.

It means so much to feel the support of others who have been through it.

regards Larry

anewdawn · Regular Joined: 29 Jan 2006 Posts: 30

Dear Larry,

I am glad to hear you are staying positive and are preparing for surgery.

I think it is an excellent idea to keep a journal. I only wish that I had done that. We did keep a photographic journal full of pictures, but I did not write anything down and I wish that I had. I believe that your brain that does not let you remember everything....like giving birth you tend to forget that worst part and only remember the end result.

I would write everything down, no matter how small it might be. In the future, you will want to go back and read what you have been through.

I lost over 50 pounds before and after surgery. But I have gained 25 pounds in 2 years. I not sure why I have gained 25 pounds, I do not eat a lot. But I look healthy again. My eyes are not sunken in my face and you can no longer see my bones sticking out. My surgeon is very pleased with my weight gain.

I have had dumping issues. You will know when it happens. I generally suffer dumping when I eat too much or I eat the wrong thing. And the problem I have is sometimes I can eat something and have no problems and other times I eat and will suffer. So it has really been trial and error and when I discover something does not agree with me I stay away.

Dumping symptoms are extreme stomach cramping, sweating and clamy skin, terrible diarrhea. You feel like you want to vomit and sometimes you do. I will curl up in a ball on the bed praying for it to pass. Once you have it, you know you do not want to go through it again. And will do anything to avoid it happening again.

I also still have problems with food getting stuck in my esophagus and I have had to have it stretched 3 times. But each time they are in there, they say everything looks good.

I have also had 2 hernias in my little stomach and have had to have major surgery to repair them. Be careful after surgery that you do not put stress of any kind on your stomach. Half of my stomach is now mesh and staples that can never come out as they are holding it together.

I hope this helps you. If you have any other questions, please ask and I will be happy to answer.

Please keep me updated!!

Dawn

TheGoat · Regular Joined: 01 Apr 2006 Posts: 10 Location: London, UK

Dear Dawn, thanks again for sharing your experience. At this stage it helps to have insight into some of the challenges I may face. I know that every situation is different but it definitely helps to know a bit more about these issues and the effects they have.

Also thanks for the enouragement on the journal. I will do my best to document my experience and share it.

The weight loss sort of frightens me as I've always been light. I've worked hard over the last 3 months to put on weight, I'm actually heavier than I've ever been. Anyway time will tell and I can certainly settle for living lighter Smile

Was also curious about your comment on not putting stress on the stomach. Is your "mesh and staples" situation related to that? The reason I ask is that I've been thinking about post operation excercising and also if I will get back to some of my passions such as scuba diving and skiing.

Hope you don't mind all the questions.

Thanks again for all your support.

regards Larry

anewdawn · Regular Joined: 29 Jan 2006 Posts: 30

Dear Larry,

I think the fact that you have gained weight is a good thing. Then if you should lose some weight after surgery, you should level out. As you stated everyone is different so you may not even lose weight. It will just depend on how long it will take you to swallow again. I had issues with food getting stuck both before and after surgery. So eating was a challenge for me. I also was very sensitive to smells, so the smell of dinner cooking were a turn off to me. They tell me that chemo can make you sensitive to smells so I am sure that was what was happening.

I was not allowed to lift anything above 5 pounds and no driving for 6 weeks. Any time you have surgery on your stomach, the stomach wall weakens. Even though I was in good shape prior to the cancer, the treatment (radiation & chemo) and then surgery and then more chemo weakened me severly.

When I started to feel better, I know I did things that I should not have done. Carry groceries, lift my grandson were things I should not have done....but it had been so long since I had been able to do things that I pushed myself.

I think your doctor will probably warn you about too much exercise and lifting until you are fully healed. I was able to do physical therapy with alot of restrictions. I joined a gym about a year after surgery and even then it was too much and had to quit. My endurance was stilll not up to par and I could not perform a lot of the exercises. Someone told me it could be 5 years before I get back to "normal" whatever normal may be.

I also have "chemo" or brain fog. I cannot remember alot of things that happened. That is why I wish I had kept a journal. Thankfully I did keep hospital reports, doctor reports and test results. As I stated my husband took lots of pictures. At the time, people thought that was odd, but I am really glad to have them. I look at them frequently, I cannot believe how bad I looked at the time and how healthy I look now.

Let me know if you have any other questions or concerns. As surgery approached I found myself getting nervous and wishing I had someone to talk to. Please feel free to contact me anytime.

Dawn

TheGoat · Regular Joined: 01 Apr 2006 Posts: 10 Location: London, UK

Thank you Dawn, I have found ALL your comments very helpful. I certainly know what you mean about chemo fog, it is horrible. Also identify with smells being a turn off.

I'm off on holiday for a week on Sunday so any last anxieties will wait till my return Smile

Hope you have a great weekend and look forward to catching up on my return.

Regards Larry

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